Who are the International CFS Study Group?

[Guest guest]

Tom Kindlon

Who are the International

Chronic Fatigue Syndrome Study Group?

The CDC has in the past used a term, " the

International Chronic Fatigue Syndrome Study

Group " , without always listing who the members

were.

For example, the Fukuda (1994) definition for CFS

(the most commonly used research definition) was

said to be created by the " the International Chronic

Fatigue Syndrome Study Group " .

Alternatively, it is sometimes cited as " Keiji Fukuda,

Straus, Ian Hickie, Sharpe,

Dobbins, Komaroff, and the International

CFS Study Group. "

However it would seem to correct to say that

Sharpe and Ian Hickie were members of the

International Chronic Fatigue Syndrome Study Group

at this time.

Questions over who the make-up of the membership

of the International Chronic Fatigue Syndrome Study

Group are relevant once again as the CDC make

reference to it in its five year plan

(see extract below or go to

http://cdc.gov/cfs/draft_5yr_research_plan.htm ).

It would seem likely that the members of the

International Chronic Fatigue Syndrome Study Group

would be involved in the " International Workshop -

Clinical Management of CFS " that the CDC also

intends to hold.

So what is the latest list of members of this group

that we have?

Well PubMed now lists with a paper published earlier

this year (Hickie, 2009), 28 members along with the

lead authors who are called International Chronic

Fatigue Syndrome Study Group (see below).

The interesting thing about

them is that many are some of

the strongest proponents of the

GET and CBT based on GET

approach for CFS.

And none stands out on a cursory glance as

somebody who would challenge suggestions that,

for example, GET and CBT based on GET should be

recommended by a international panel as the

management strategies of choice for CFS.

The paper also included the following sentences:

" The International CFS Study Group also

recommended that for research purposes, the

diagnosis of CFS should be made using validated

instruments that allow standardized assessments of

the major symptom domains of the illness.

The present study supports that recommendation

and suggests an empirical diagnostic algorithm

similar to that used by the Centers for Disease

Control and Prevention [51]. "

51. Reeves WC, Wagner D, Nisenbaum R et al.

Chronic fatigue syndrome: a clinically empirical

approach to its definition and study. BMC Med 2005;

3:19.

The interesting thing about this is that the paper

had pretty much nothing to do with the Reeves

(2005) empirical definition which suggests that the

other authors of the 2009 paper were/are willing to

go along with Bill Reeves with dubious statements

like this.

The make-up of the International CFS Study

Group in 2010 will be very important with regards

to the work the CDC CFS team will be doing with

its multi-million dollar annual budget over the

coming years, as well as the general direction of

CFS research e.g. the definition that it may draw

up or recommend.

Tom Kindlon

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Don't support the Reeves/empirical

definition/criteria for CFS?

Sign the petition at:

http://CFSdefinitionpetition.notlong.com

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Appendix 1:

http://cdc.gov/cfs/draft_5yr_research_plan.htm

Extracts that make reference to the International

Chronic Fatigue Syndrome Study Group.

2. International Workshop - CFS Case Definition

Cfs is defined by symptoms and disability, has no

confirmatory physical signs or characteristic

laboratory abnormalities, and the etiology and

pathophysiology remain inchoate.

Difficulties with accurate case ascertainment

contribute to this ignorance.

To help resolve this, cdc convened an international

cfs study group, which met in 2000, 2001, and 2002

and in 2003 published recommendations to guide

systematic and reproducible application of the case

definition.

The study group´s recommendations have been

criticized as too cumbersome for routine use in

clinical practice and there is a need for current

international consensus as to status of the published

2003 study group recommendations and as to an

appropriate cfs case definition for health care

providers.

In 2010 cdc will convene an international workshop

to discuss research and clinical cfs diagnostic criteria

for adults and children and will produce published

guidelines as to diagnostic criteria.

Addresses Goal 2 (B.1)

3. Workshop International - CFS Study Group

The illness CFS is clinically heterogeneous and likely

comprised of subtypes representing various

behavioral, genetic, environmental, and infectious

factors and different biological pathways.

To begin the process of developing collaborative

research and data sharing networks, we will initiate

another series of International CFS Study Group

workshops to critically assess current clinical and

empirical knowledge concerning the pathophysiology

and heterogeneity of CFS and identify research

priorities and to discuss issues such as common data

elements, data collection techniques, and data

sharing.

Planning of this meeting and selection of participants

will draw heavily upon experience from the 2

workshops discussed above. We anticipate that the

International CFS Study Group will meet in 2010. `

``

Appendix 2

Aust N Z J Psychiatry. 2009 Jan;43(1):25-35. Links

Are chronic fatigue and chronic fatigue

syndrome valid clinical entities across

countries and health-care settings?

Hickie I, Davenport T, Vernon SD, Nisenbaum R,

Reeves WC, Hadzi-Pavlovic D, Lloyd A;

**International Chronic Fatigue Syndrome Study

Group**.

Clicking a button on PubMed one gets the following

list for those who make up the International Chronic

Fatigue Syndrome Study Group:

Collaborators (28)

Bleijenberg G,

van der Werf SP,

Prins JB,

Blenkiron PM,

Buchwald D,

WR,

R,

Lynch S,

Kirmayer LJ,

Taillefer SS,

Lee S,

NG,

Gillespie NA,

McIlvenny S,

Sartorius N,

Ustun TB,

Skapinakis P,

Wessely S,

Chalder T,

Hotopf M,

Nimnuan C,

Candy B,

Darbishire L,

Ridsdale L,

White PD,

JM,

Wilhelm K,

A.

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(Part 2) Who are the International Chronic

Fatigue Syndrome Study Group?

Two people sent me further information on this that

I thought I would share.

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For the Fukuda definition (1994), a group leader from

Australia pointed out:

" The following are the other members of the

International Chronic Fatigue Syndrome Study

Group:

National Institutes of Health, Bethesda, land:

Ann Schluederberg, ScD; University of Colorado,

Denver, Colorado: F. , MD; Prince Henry

Hospital and University of New South Wales, Sydney,

Australia: R. Lloyd, MD, FRACP; King's

College School of Medicine and Dentistry, London,

United Kingdom: Simon Wessely, MRCP, MRC Psych;

Polyclinic Medical Center and Pennsylvania State

College of Medicine, burg, Pennsylvania:

M. Gantz, MD; Texas A & M University Health

Science Center and & White Memorial Hospital,

Temple, Texas: P. Holmes, MD; University of

Washington Medical Center, Seattle, Washington:

Dedra Buchwald, MD; University of Toronto, Toronto,

Canada: Abbey, MD, FRCP©; University of

California, San Francisco, San Francisco, California,

and Alta Bates Hospital, Berkeley, California:

Rest, MD; University of California, San

Francisco, San Francisco, California: Jay A. Levy, MD;

Food and Drug Administration, Rockville, land:

Heidi Jolson, MD, MPH; Lake Tahoe Medical Center,

Incline Village, Nevada: L. , MD;

University Hospital Nijmegen, Nijmegen, the

Netherlands: Jan H.M.M. Vercoulen, PhD; Centro

Regionale di Riferminento Oncologico, Aviano, Italy:

Umberto Tirelli, MD; Karolinska Institute at Huddinge

University Hospital, Stockholm, Sweden: Birgitta

Evengard, MD; New Jersey Medical School, Newark,

New Jersey: H. Natelson, MD; Centers for

Disease Control and Prevention, Atlanta, Georgia:

Lea Steele, Michele Reyes, and C. Reeves,

MD. "

He says he thinks the big question is,

" Does the CDC have the authority to

appoint such a group " , and " Why do they

have more authority than any other

collaborative group? "

``

Another activist pointed out that in the paper,

" Identification of ambiguities in the 1994 chronic

fatigue syndrome research case definition and

recommendations for resolution " ,

http://www.biomedcentral.com/1472-6963/3/25 the

E-mail address for the International Chronic Fatigue

Syndrome Study Group is given as (Bill)

Reeves' E-mail address: wcr1@...

He also found another reference to the group for the

Fukuda (1994) definition:

" In response to criticisms of the original CDC

definition of CFS as too ambiguous and

over-exclusive, and to facilitate a more systematic

collection of data internationally, the International

Chronic Fatigue Syndrome Study Group, headed by

CDC and including representatives from Australia and

Great Britain, proposed a revised CFS case definition

in 1994. " [1]

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I'm afraid I don't see myself having time for

investigating this much further - I have fallen behind

with some work as I spent quite a bit of time over

the summer on writing letters to medical journals

(I've heard that I've had three more accepted which

would be five in the last year). Most other activists

and indeed researchers are not writing letters to the

editor so there is a huge gap in this area so I think

going forward I'm probably going to use a lot of my

energy for international activism (i.e. apart from

what I have to do in Ireland) on writing letters to

the editor.

Regards,

Tom